For families affected by this devastating condition, mitochondrial donation offers something once thought impossible – the chance to have a healthy, genetically related child without passing on faulty mitochondrial DNA.
The technique, also known as mitochondrial replacement therapy, is a powerful new reproductive option and a major milestone in the journey towards stopping mitochondrial disease in its tracks.
Mitochondrial donation works by transferring the nuclear DNA from an affected woman’s fertilised egg into a healthy donor egg with functioning mitochondria. This results in a baby being born that is genetically related to both of its parents but free of the faulty mitochondria that could lead to the disease. If you’d like to find out more about how the process works, head over to our Research Zone to watch our video explainer (link).
A law we fought to change
This breakthrough is especially meaningful to us at The Lily Foundation because we were there from the very beginning. As some of you may remember, back in 2015 we were instrumental in lobbying for a change in UK law to allow the use of this type of IVF technique, working closely with scientists, mitochondrial experts and policymakers.
Together with a number of mitochondrial disease patients and families, we shared real-life stories, gave evidence and ensured the patient voice was heard throughout the process. Now, those efforts have come to fruition.
Reshaping the future for families
Until now, families at risk of passing on mitochondrial disease faced heart-breaking decisions. Mitochondrial donation changes that, offering a new path – one grounded in science, ethics and compassion.
“We’re absolutely delighted with the results of these published papers,” said Liz, Lily founder and CEO. “We fought long and hard for this change so that families could have choices. After years of waiting, we now know that eight babies have been born using this technique, all showing no signs of mito. For many affected families, it’s the first real hope of breaking the cycle of this inherited condition.”
Sir Doug Turnbull, Professor of Neurology at Newcastle University and senior author of the published research, said: “Mitochondrial disease can have a devastating impact on families. Today’s news offers fresh hope to many more women at risk of passing on this condition who now have the chance to have children growing up without this terrible disease. To be able to offer this as part of an NHS Care Pathway, in a well-regulated environment, means we can ensure it is available to all affected women in the UK.”
But to truly understand the impact on real families, just listen to one parent whose life has been transformed by the technique: “Thanks to this incredible advancement and the support we received, our little family is complete. The emotional burden of mitochondrial disease has been lifted and in its place is hope, joy and deep gratitude.”
What happens next?
While this technique is only suitable for a specific group of patients and is carefully regulated, it represents a monumental shift in what’s possible for the mito community.
If you’re affected by mitochondrial disease, starting or growing a family can raise many questions. The Lily Foundation are here to support patients, and there are a number of options to be considered. Learn more about the mitochondrial reproductive options that are available.
This breakthrough reminds us that mitochondrial research is making advances – and it shows what science, advocacy and community together can achieve. The Lily Foundation will continue to support further research, campaign for better treatment and care and ensure mito patients and families are at the heart of every conversation.
Our mission remains the same: to improve the lives of people affected by mitochondrial disease, and to one day stop the disease completely.
This news brings us one step closer.
You can also read Newcastle University’s press release announcing the publication of the papers.